Comic book writer Alejandra Gámez has lived in Mexico City for most of her life. When she was four, she moved to the city without any known health problems; 24 years later, she developed a case of bronchitis that wouldn’t go away, which eventually turned into adult-onset asthma. “From that moment on, I realized that my life would never be the same.”

When Jessica Newman moved to Mexico City from Washington D.C. two years ago to be with her partner and advance her photography career, she suddenly struggled with her asthma more than she ever had. Moving to Mexico City “really took a toll in the beginning” she says. “I was sick all the time, I couldn’t work out and I had zero energy.”

Alejandra and Jessica are just two of the thousands of asthmatics–both lifelong and adult-onset–living with asthma in Mexico City.

Life in Mexico City means that comic book artist Alejandra Gámez must constantly be managing her asthma medications.

The air pollution in Mexico City is among the worst in the world. In May 2016, Mexico City was in a near state of emergency because of high levels of ‘short-lived climate pollutants’ (SLCPs). Since then, Mexico City has reached unhealthy levels of air quality almost everyday. The Interamerican Association for Environmental Defense (AIDA) says that it is one of the most urgent human rights and health issues in the city.

Air pollution is particularly bad in Mexico City because of its geography. The capital rests, surrounded by mountains, at an elevation of 7,000 feet. When it doesn’t rain and there is no wind, the contamination is trapped. And there’s a lot of contamination: with 2.1 million people living in Mexico City, it has the worst traffic congestion in the world, according to the TomTom Traffic Index.

That results in a lot more asthma. Astrid Puentes, an environmental lawyer from AIDA’s Mexico City office says, “Air quality impacts every single person in Mexico City. It’s the most democratic impact that we have.”

When the Air Quality Index is low, the air above Mexico City turns practically brown.

Especially if you’re an asthmatic, a big part of daily life in Mexico City is checking the Air Quality Index. Jessica shows off the app she uses on her phone, Plume: “Right now, it’s telling you not to run outside, take it easy on a bike, and not to take your kids outside… it’s great to see it, but it’s also gross.”

In Mexico City, the Air Quality Index is almost a second weather gauge. “Mexico City is one of the only places, that if you are a mom and your child is having a birthday party, you have to think about if it’s ozone season,” says Puentes.

Alejandra agrees. “You have to be careful and not expose yourself on days with bad air quality,” she says. “When air quality decreases, it affects us all. But people with asthma and bronchi infections are already predisposed to react. Your body reacts to something that is attacking it – asthmatics just have it worse.”

Managing asthma is a full-time job in Mexico City. Back in D.C., Jessica didn’t have to use her inhaler; now, she takes it every morning, and throughout the day as needed. She sleeps with two air purifiers in her bedroom, and she changes her clothes before going to bed so she doesn’t bring pollutants with her. If she feels an attack coming on, she takes her rescue inhaler, jumps in a hot shower, and tries to calm down.

One of the many apps Mexicans use every day to measure the Air Quality Index.

The constant fear of an attack can be traumatizing in its own right. As Jessica describes it: “it feels like drowning above land. It takes a lot of mental fortitude to calm down with something like that… I do feel like it’s knocking years off my life, living here.”

When Alejandra travels outside of Mexico City for book fairs, she really can tell the difference the city’s pollution is having on her health. “With the clean air, I can walk and never have an asthma crisis. But in Mexico City when the air is bad, I can have an attack when I reach the top of a staircase.” She’s considering moving out of the City, just for the sake of her lungs.

As for Jessica, as an active photojournalist, managing her asthma is a major part of her life. She’s learned how to ensure that it doesn’t affect her work, always being prepared while on assignment. “Most of the time I forget I have it,” Jessica says. But life in Mexico City means that asthma is never far from her mind for long. “[Asthma] is a huge part of who I am,” she says. And when pollution is high, and she’s struggling for breath, Jessica realizes just how bad it can be. “I forget that [asthma] can be fatal.”

https://folks.pillpack.com/wp-content/uploads/2017/08/3240867768_bd1af161c3_o.jpg25923872Emily Crainhttps://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngEmily Crain2017-08-10 09:02:532017-09-04 17:41:22Breathing Free In The Most Asthmatic City On Earth

In her third year of medical school, Glaswegian Josie Vallely made a sobering discovery: she didn’t much like medicine.

Vallely was good in science and enjoyed working in big teams with different kinds of people, but she didn’t like the culture of medicine. She didn’t like the unreasonable hours. Most of all, she didn’t feel like she was in a position to be as useful as she could be.

“When you’re doing hospital medicine, you have to consider the whole person, but often you’re not looking much further beyond that person. You’re not looking at a societal or cultural perspective,” she says. “There is lots of problem-solving, but it’s on a minor scale. I was more interested in major problem-solving.”

Headshot of Josie Valley. Photo: Alice Myers

Plus, she adds with a laugh, “I couldn’t do the hierarchy. I just wanted to do my own thing. You definitely can’t do your own thing in medicine.”

Vallely’s desire to do her own thing and achieve impact at scale has resulted in a career and practice uniquely her own. Combining her natural interests in story and social justice with fine-arts methods and commercial art sensibilities, she creates socially motivated visual art focused on illness narratives, blending original production with remixing, autonomy with collaboration, and personal expression with universal experience. At the root of it all lies her desire to combat stigmas associated with health conditions, promote empathy, and make visible people too often overlooked.

But first, she needed to recover from medicine.

“I left medical school in a bit of a crisis,” Vallely says. “I didn’t know what I was going to do. It took me a while to find my feet again.”

I left medical school in a bit of a crisis… It took me a while to find my feet again.

To do so, Vallely turned to her lifelong interest in the arts and enrolled in a foundational arts course, a decision she describes as self-care. “I wanted to do something that would make me feel good,” she says.

That yearlong dose of personal medicine both succeeded and backfired — but in a good way. “At first I really shunned anything to do with health in my work,” she says. “I wanted to move away from medicine and not think about it. But as I started to explore my art practice, I found that what I was interested in was people with [health-related] narratives, and bringing those into the limelight and exploring them visually. People’s health was a narrative that wasn’t being discussed.”

The desire to bring health and arts together led Vallely to pursue formal training at the Glasgow School of Art, where she earned a Master of Design degree specializing in illustration in 2014. As her capstone project, Vallely chose to explore the experiences of people with chronic obstructive pulmonary disease (COPD), a progressive, often fatal lung condition characterized by shortness of breath, fatigue, and a persistent, chesty cough. As someone with asthma, Vallely is particularly passionate about lung health issues and describes COPD and related lung conditions as “a really stigmatized sector of illness,” often rooted in issues of class and poverty.

Derek’s Story by Josie Valley. Valley often makes abstract art about asthma and other breathing issues.

“If you’re somebody that can’t get up a flight of stairs without taking a break, people make really snap decisions about what kind of person you are,” she says. “People aren’t aware of the scale of lung conditions, that there are so many people with really debilitating lung conditions because they’re trapped at home. They’re not out in society at large. You don’t see them.”

Through bold shapes and liberal use of color, Vallely strives to make these hidden people visible, to step away from judgment and the binary categories of illness and wellness toward the universal. “It’s about exploring everybody’s interactions with health and illness, and acknowledging that we all work with both of them at any time in our lives,” she says.

To find this balance, Vallely eschews didactic directives and literal depictions of disease, opting instead to use abstract images to express narratives of health conditions through atmosphere and metaphor. By working through abstractions, she hopes “to tell people’s stories without taking their stories as my own and leaving them behind.”

If you’re somebody that can’t get up a flight of stairs without taking a break, people make snap decisions about what kind of person you are.

“A lot of artists who make work about health work from a very personal place. That’s not something that I’ve ever done,” Vallely says. “But the fact that I have direct experience of chronic conditions, both physical and mental health conditions, means that I have empathy with the people that I’m working with. I don’t reduce people to their conditions. I understand that that’s just a tiny part of your life experience. Even if you have a condition that from the outside might seem to take a lot of your time and energy, it doesn’t mean that that’s the sum of you. So I don’t work from my own personal experience, but I do work from my own viewpoint, which is influenced by my experience.”

By finding that balance between her own viewpoint and others’ experiences, Vallely strives to create visual work that resonates both for people with a particular condition and those without.

Josie Valley at a workshop. Photo: Sandra Franco.

Take the works from her Master’s degree, for example. For those pieces Vallely reached out to people with COPD and assembled a scrapbook of participants’ experiences gathered from emails, interviews, photographs, and journals. She then translated the whole into abstract visual images. The end result was a series of large, dark landscapes, tinted with swaths of color, often with little lightness or relief.

“They’re quite abstracted,” Vallely says. “Lots of people told me that they couldn’t really see how they were related to COPD in any way.”

But then one particular man came to a viewing of the work. “There was a guy from Alloa in Clackmannanshire, which is quite a small, old industrial town in Scotland,” she says. “He’s looking over [a big, spacious, dark landscape], and he’s like, ‘That’s exactly how I feel when I’m having a flare-up. That is how I feel.’”

By prioritizing the experiences of people with particular conditions, Vallely hopes to generate a response that translates for a broader audience. “For someone who’s not experienced what it’s like to be breathless and trying to get up the hill, or not able to get out of your chair because you can’t breathe, it’s hard to put yourself in that place. The idea with some of my work that’s more abstract is to prime you to be open to that experience. The image might not bring up memories of a similar experience, but it might bring up emotions of feeling trapped or anxious or feeling grief. Those are similar emotions that people will go through when they’re dealing with a diagnosis, especially with chronic, long-term conditions that there’s no cure for.”

Her approach is subtle, which is unusual in itself. “A natural route in visual communications with public health is shock tactics or didactic information-giving,” Vallely says. “I’m much more interested in people coming to their own conclusions. [The art] doesn’t tell people to do anything. It gently asks them to consider elements of life that they mightn’t have thought about before.”

“That’s exactly how I feel during a flare-up. is is how I feel.”

For all her desires for autonomy, Vallely rarely works completely alone. Rather, she works in conjunction with such organizations as Eczema Outreach Scotland, ASCUS Art & Science, the British Lung Foundation, and the Mental Health Foundation, and bases her work off narratives collected through collaborative, participatory experiences that viewers of the final works might never see.

Last year, for example, Vallely and another artist led workshops around Scotland for children and families affected by eczema (which affects her, too). Eczema is an itchy chronic condition that can result in both physical and emotional trauma, affecting both people’s appearance and ability to sleep (and therefore the quality of their waking hours as well). More so than the end result, Vallely’s goal was to bring these children together to explore their lived experiences of eczema by way of fun, messy activities in a safe, social space. The final work was composed of the drawings made by these children and showcased at the Edinburgh International Science Festival this past spring.

Even if you have a condition that from the outside might seem to take a lot of your time and energy, it doesn’t mean that that’s the sum of you.

“I’ve always enjoyed the process of bringing unexpected stuff together,” she says. “I like people to feel like they’ve produced this stuff, and I can bring it together in a way they didn’t expect or believe would be possible.

Medicine may not have been her calling, but Vallely credits her time in medical school for giving her a better understanding of the scale and scope of the structural and cultural inequalities embedded in many health issues. Through her work she hopes to expose people both inside and outside the medical community to a wider variety of patient-side narratives and combat the conscious and unconscious biases that affect both the quality of life of people with long-term conditions and the quality of care and support they receive.

By reaching beyond individual patients, Vallely hopes to find a usefulness both for herself and for her art. Rather than create art for art’s sake, she creates to affect larger change, starting from her own local community outward.

“I don’t see my artwork as being inherently useful to people,” she says, “but I see me being myself and being a proactive and happy member of my community as being inherently useful. That’s not what I was when I was studying medicine. But that is what I can be when I’m working with lots of different people doing work that I love.”

https://folks.pillpack.com/wp-content/uploads/2017/03/COPD-story.png11562162Kellie M. Walshhttps://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngKellie M. Walsh2016-08-24 09:00:262017-04-03 15:02:57Art That Makes People Think: "This Is How I Feel."

A lifelong struggle with asthma profoundly influenced the art of Marcel Proust, author of In Search Of Lost Time.

A thick beard masking his sunken cheeks, the dying 51-year old Marcel Proust sat in his bed, propped up by pillows, covered with blankets. Sleeping during the day, and working at night, in a room with cork-lined walls to stifle noises, Proust was working on the page proofs of the fourth volume of his one-and-a-half-million word novel À la recherche du temps perdu, or In Search of Lost Time.

The autobiographical novel depicts an unnamed “narrator” who, like Proust, lived a comfortable life, hobnobbed with aristocrats, was a writer, and suffered from asthma. This illness affected Proust deeply, and, in many ways, helped forge his way of looking at the world, and his way of writing about it.

Critics have suggested that Proust’s writing was directly affected by his asthma. Proust is known for his very long sentences, the longest being 847 words. As if, perhaps, he was afraid that if he stopped, he might never draw another breath. Walter Benjamin, in The Image of Proust, said that the author’s asthma “became part of his art – if indeed his art did not create it. Proust’s syntax rhythmically and step by step reproduces his fear of suffocating.”

Proust’s syntax rhythmically and step by step reproduces his fear of suffocating.

The young Marcel was afflicted by both hay fever and asthma, then considered diseases of the rich; only the well off suffered from them. Modern research suggests that these conditions can be caused or exacerbated by excessive hygiene (the “hygiene hypothesis,” which suggests that excessive cleanliness causes our immune systems to overreact). Proust’s father Adrien was a hygienist, who wrote books about public hygiene, and defending Europe from cholera and plague, and who believed in the power of long walks and strict regimens to maintain health.

A look at Marcel Proust’s manuscript for In Search of Lost Time.

Marcel was subjected to the treatments of the time, in an attempt to desensitize him to pollen. One of these was nasal cauterization, which he underwent more than one hundred times. After these painful treatments had been completed, he was told that he could go to the country and would be free from the symptoms of hay fever. He did so, and as soon as he neared some blooming lilacs, suffered a severe asthma attack, with his hands and feet turning blue until he was returned to Paris.

Asthma was poorly understood at the time, and was thought to be a purely psychosomatic illness. While stress may trigger symptoms in one who already has asthma, and may also exacerbate attacks, they are not the cause of the disease. Proust was branded as having “neurasthenia,” a catch-all diagnosis for those with diseases doctors didn’t understand, including fatigue and depression. Proust became a textbook hypochondriac, suffering from a palette of symptoms affecting his breathing, his stomach, sinuses, bowels, and joints. But he documented them in detail in his massive correspondence, and it seems now, in hindsight, that his illnesses were real, and serious. For example, in 1900, he wrote to his mother that he suffered “…an attack of asthma of unbelievable violence and tenacity-such is the depressing balance-sheet of my night, which it obliged me to spend on my feet in spite of the early hours at which I got up yesterday…”

A sensitive child to begin with, Proust became more insecure as those around him suggested that the asthma was just in his head, that he merely craved the tenderness of his mother. One of the earliest scenes in his novel describes an evening when the narrator was unable to sleep. Charles Swann was dining with his parents, and the boy couldn’t sleep unless his mother came to kiss him goodnight. Proust’s illness led him to adapt his life to avoid symptoms, but it also helped him become hyper-observant. He didn’t shun society, but when he did go out, he acted like a sponge, recording, in his mind, every event, every person’s expressions and words, so he could create his characters.

Asthmatics often sleep poorly, and have attacks at night; Proust was no exception. He shifted his schedule so he slept during the day and worked at night. And he complained of other ailments as well: joint pain, digestive issues, fevers, and more. Long seen as just a hypochondriac, Proust may have suffered from more than just nerves. Researchers have suggested he may have had Ehlers–Danlos Syndrome or Familial Mediterranean Fever, both hereditary illnesses, neither of which could have been diagnosed at the time.

Proust smoked stramonium cigarettes like these, which were (ludicrously) believed to help cure asthma during his lifetime.

Doctors were of little help to him – he mocked their incompetence in his novel – and Proust self-medicated his asthma, drinking large quantities of coffee, smoking stramonium cigarettes and inhaling fumigation powders that were believed to help clear the lungs, and taking laudanum (an opiate) and veronal (a strong barbiturate) to sleep. The latter was once almost fatal to him, when he, or a pharmacist, once miscalculated the dose, and he took ten times what he should have.

Proust’s weakened lungs eventually failed him. After a night out at a chic party – he was always worried about catching a chill, and did so on this evening – he developed bronchitis and then pneumonia. Several weeks later, the labored breathing he had struggled with for most of his life ceased.

Of course, Proust’s work has since proven to be immortal. In Search of Lost Time is widely hailed to be a masterpiece, while Shakespeare scholar and literary historian Harold Bloom has called Proust one of the great authors of all time. His style and his art, though, were so heavily influenced by his lifelong battle with asthma, it’s possible that if Proust had been born with healthier lungs, he might not be remembered today. Could there be a more profound testament to how our conditions shape us?

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.